Important questions to ask the NS

[MonkeyMilk]

I recently asked about exercise intolerance being associated with Chiari. I have been further evaluated by my pulmonologist and she is convinced that my symtoms are associated with my Chiari I, and will not clear me to start pulmonary rehab. until I am evaluated and treated by my NS. Until this point I have never brought up Chiari symptoms to my NS, the only time I was symtomatic was when I was having a shunt malfunction but they went away after revisions. That being said, does anyone have reccomendations of important things to find out/ questions to ask, things to tell the Dr.? This is not somethign I have ever discussed with him before.

The last time my Chiari was able to be measured (I had braces during my other MRI's so it couldln't be seen clearly) was when I was 11 (I'm now 20) at which point it was 6 mm below the foramen magnum.

Currently symtoms are. HA (back of head/eye pain and pressure esspecailly on movement), drop in vision accuity and blind spot, spuratic numbing/tingling of hands, tachychardia.

I have an appt. with my NS next Tue. If anyone has suggestions of how I can make this an effective appt. and get the most out of it I would love to hear them. I am hoping to get this out as soon as poosible.

[roz1950]

Darcie your link does not work

[Kiya]

I would also love to hear things to bring up the the NS. I have my first appt in a couple weeks.

[MonkeyMilk]

Thanks for telling me about the error in my caringbridge link I didn't even notice it. It works now!

[roz1950]

I still cant get into your site . I get the front page but nothing else. I have several other friends with caring bridge sites and can get into those no problem . Just cant get into yours like , Story , Journal and guestbook.

[MonkeyMilk]

Quick update... I went to my NS (who I already am treated by for Hydrocephalus) and he looked at films from 4 years ago and was like "I don't see any indications as to why you would be having symptoms" and pretty much left it at that. So... We are back at square one I'm just going to have to fake it until something happens aand they HAVE do deal with me. That's usually how we roll. It's so frustrating though.

roz1950 - I'm sorry my site itsn't working for you. I'm not sure why that would be though because I checked it on another computer and it's wokring fine for me. If you want you can always just go from the main page to "visit" then site name: darcie again sorry I don't know why it's not working for you but I appreciate your interest!

[LIZARD]

Quick update... I went to my NS (who I already am treated by for Hydrocephalus) and he looked at films from 4 years ago and was like "I don't see any indications as to why you would be having symptoms" and pretty much left it at that.

This is hard lesson to learn, but it sounds like it may be time to find a nsg who's well-versed in ACM. If you're really fortunate, you might be able to find one with ample experience in both ACM and hydro, but it is indeed possible for a very good nsg to know a lot about hydro and nearly nothing about ACM. Try the following sites for referrals:

www.ASAP.org
www.Chiarione.org
www.WACMA.com
www.conquerchiari.org


Good luck...

LIZARD :)